So we are now waking up on day 10 of being at 50% of our original Pheno dose. I would say that overall this drop has been slightly easier than the other drops as far as Bennett's sleep and daytime fussiness goes. But it still means it regularly takes us about 1-2 hours to get him in his crib (swaddled, mind you) and he'll only ever sleep in about 3 hour stretches.
He did AWESOME on the drive back from Utah, and we are definitely driving through the day with him from now on--NOT the night, haha. We were able to do the whole drive in one day which was fantastic because we had a lot of work to do on the house when we got home before Dave went back to work. We had left it a complete disaster because we were rushing to beat the storm when we left.
Anyway, since we got home, Bennett's sleep has been awful again, and we're guessing it's because we've been at about days 7-10 of the drop, and the half life can be up to 9 days for Pheno, so he's probably just finally starting to feel the drop.
On the plus side, though, since the day we dropped this last dose (literally), I haven't seen him intentionally army crawl once! He is on his knees all the time!! And walking when he can be. If he falls into an army crawl he pops right back onto his knees asap. And his babbling has only increased. He's starting to differentiate MaMa and DaDa I think. Still no idea what they mean, but he's definitely exploring his range of consonants.
Unfortunately, with the sleep issues and the fact that he'll only ever take about 2 bites of table food before refusing it in favor of baby food, I'm getting a little more worried that he has some sensory processing issues going on. I asked our team coordinator from Early Intervention to have the occupational therapists come out at our next appt. to have him assessed for sensory processing issues. And in the meantime, I'm trying to sew him a weighted blanket to see if that'll help him sleep at night. The swaddle is NOT safe and I'm getting anxious about it, but there is literally no other way for him to soothe to sleep right now. We even had a couple of nights in the baby swing with Hamilton playing for hours this week!!
Luckily, yesterday and last night were a slight improvement. It hasn't taken nearly as long to get him to go to sleep on us, and the transition from our arms to the crib has gone much more smoothly and quickly even if we bump or make a noise or whatever. I think day 9-10 is where we start to really see him level on the Pheno drop. I wish we could just stay here for a little while so we could all catch up on our sleep, but with the baby coming in basically 2 months, we are in a rush to get him fully off so we can settle his sleep routine ASAP.
Oh, and yesterday we also started giving him his 40 mg of Zonegran in the morning instead of night to see if that would help. So who knows what exactly is helping, but something's gotten better in the last day or two. Hopefully it lasts!
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